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I read a study for the US where HIV patients in certain instances have longer than normal life spans. For example certain races of certain income levels in certain geographic areas, same as HIV-negative people meeting those same criteria.

The county with the highest life-expectancy in the U.S. for males is Fairfax County, Va., where males live 81.67 years. That's better than the life expectancy of Japan and Switzerland, which are atop the list for worldwide longevity.

However, there are many counties where one's lifespan is more like living in a third world country.

(Sorry, that link is just about county discrepencies about life span in general -- but the one about HIV followed the same count ours. For HIV+ patients there are further variables such as at what point you are diagnosed after infection -- the later you present for diagnosis the worse your eventual outcome statistically, etc., even if you live in a resource-rich healthcare geographic area)

btw, I would still caution against focusing so much on life expectancy expectations. Does it particularly matter if you live to 81.67 years if your last 30 of those you have debilitating arthritis that makes your life intolerable and that you'd not have gotten until you were 78 if you'd been HIV-negative. I could add an entire conga line of things such as that which are occurring in our longer-term survivors at earlier ages than are appropriate.

I hope that modern medication will lead to fewer side effects on the long run for all hiv patients - and that future treatment will be even better e.g an antibody-based therapy given monthly. And therefore in my opinion, life expectancy matters.

That is true! I am well aware of the concept of residual inflammation due to ongoing activation of the immune system, and thus "accelerated aging". However, these concerns are also debated, and some researcher find that accelerated aging is not a major concern e.g. positive individuals do not develop myocardial infarction, kidney and liver disaeases and non-AIDS-definning cancers at a rate much higher than the general population, don't know specific about arthritis.

Anyway, also seen in this light I find it hopefull message that life expectancy is normal to near normal, modern treatment most often well-tolerated and the concept of accelerated aging a misnomer. At least that is the illusion I prefer to live in as the impact of this story on my mental health is much more constructive than ongoing thoughts about future maladies that may or may not be a problem.

I admit that it was incorrect to state that the rates were not much higher, when they are significant higher for myocardial infarction, kidney disease, and HIV-related cancers. However, I wish to add it is important to remember that if the conditions are not common, then a doubling in risk is still not of importance e.g. if the risk of Karposis sarcoma is 1 in 100.000 and 50-fold increased risk in positives still leads to a low number in absolute numbers.

Interestingly, in the referred paper, the authors did not find increased risk of non-AIDS-related cancers. Cancer is becoming the leading death cause in many industrialized countries world-wide as cardiovascular mortality is decreasing due to better prevention and treatment and therefore it is nice to see, that positive individuals in this paper did not experience an increased risk of these diseases.So, the question really is: will we fare good as HIV-positive on the long run or will it become complicated by many other diseases – and what can modify the course. I think two observations are important:

1) In respect of the increased risk of cardiovascular disease HIV-positive individuals experience, this risk is in the same magnitude as being a smoker, having elevated cholesterol levels, approximately a doubling in risk. Some of these risk factors are modifiable, some are not – and however much I wished it, HIV-status is yet not a modifiable risk factor, but as cardiovascular disease is a complex multifactorial disease, it just underlines the importance of modifying whatever risk factor you can, e.g. not being obese, regular exercise, healthy diet, thereby counteracting the increased risk caused by the HIV-infection.

2) It has been observed that individuals with a preserved normal cd4/cd8-ratio above 1 as in a negative individual fare better with fever events of every kind than individuals with a compromised ratio as a marker of immunosenescence.

Modern treatment and especially early treatment have to potential to preserve the cd4/cd8-ratio in the normal area, and I think this is a strong argument for the earliest possible treatment. So, for individuals getting diagnosed today in the times where modern, less toxic treatment luckily has been developed, I think the message should be that you should start treatment as early as possible to preserve the immune function, which is important on the long run to prevent non-AIDS-related diseases, most importantly perhaps cardiovascular disease, where elimination of other risk factors are equally important. In that case, I think the prognosis will be very good also on the very long run – and my initial enthusiastic comment on increased life expectancy should be seen in this context. It also underlines the importance of research of a cure, as not everybody get diagnosed early and also for individuals who have survived trough the times where no or toxic treatment was the only thing available.

Hi everyone,The more I read, the more I feel lucky to have been diagnosed in the acute phase and to have started haart ASAP, less than 10 weeks after the exposition.

It's because of you all, and because of some friends found on the net, that I got a precise idea on what I needed to do just after my diagnosis: starting haart no matter what my numbers were.

I met a wrong old minded doctor first, who said, even if I told him I was willing to start haart asap, that I should have waited, for genotype, for my cd4 to reduce, for... Whatever.

After this deceiving visit, I fought to change doctor and after many phonecalls, researches on the net and trips to the hospital, I finally found the right doctor: she didn't even had to listen to my reasons: I said acute seroconversion syndrome, she said: you're gonna start tomorrow.

My numbers are good, my psychological state is much better, and I thank you all who made me understand the importance of an early treatment.

Don't let it go without fighting, if you inform yourself and get an idea, follow it and don't wait for the fate. Make your own.

HIVitalian, that is all well in good that you are confident and content with your experience. But try not to trash the idea of waiting for a genotype, as standard protocol. That is a perfectly valid route, as well.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Hi mecch,I agree, I didn't want to say that everyone should start haart ASAP, I was just talking about patients like me who were diagnosed during the acute phase.In any other case it is clever to wait for the virus genotype, few weeks don't change anything if the infection is not acute, but if you have the "luck" of been diagnosed very early, I think you should know there's this chance to follow an early therapy and few weeks may be crucial, there are studies who limit the benefits of this kind of approach to the first 10 weeks after the exposition.

Obviously they still are just studies, and pretty new ones, so we have to wait for the results in years.

But the message I wanted to send (and I wish someone could have done it with me, because I could have earned a couple more weeks) is:

There are chances that a very early therapy in acute (and only acute) patients could bring better results on quality and expectancy of life, and to make very few reservoirs of the virus, so know it and be conscious that in such cases, if you think this is the right road to follow, every day is important. Talk to your doctor and try to discuss this with him.

in EVERY case it is more clever to wait for the genotype. After 35 yrs+ of HIV running it's course across the world, many many more people are now treated for HIV rather than untreated. This means the amount of wild virus (naturally occuring, never exposed to meds) is very low compared to the amount of mutated virus that could be transmitted.

In the old days when HIV was first being treated, a new patient could be started on almost most any regimen with a high chance of effective therapy. But as time has progressed, it has become much more imperative to genotype first to ensure the first regimen will actually be effective. To start HIV therapy these days without knowing if it will be effective is to risk short term side effects, long term effects, unwarranted stress, funding and resource issues - not to mention the underlying problem of ineffective therapy (ie HIV continueing to increase not decrease!)

......for example my HIV has mutated many times and is resistant to several medications. IF I was to transmit HIV to someone, a genotype would show that their HIV was resistant to those meds and the patient would have to be prescribed something other that Atripla (because my HIV is resistant to Sustiva and several other drugs)......

There are different theories, and what you say is right, but try to look for what some recent researches say about timing. I'm sure you know very well all the stuff, the fact is that in acute patients there is a big chapter just opened and choices are still on trial.I've been put on a trial study exactly for this.

The theory is: if you are an acute patient, don't let the virus colonize your reservoirs, and every single day can be important. My therapy was given without genotype not because of unconsciousness, but knowing all this. If genotype would have been "wrong", drugs could have been changed, and they weren't because I'm a wild type. Also, I was put -for the trial study- on 5 different drugs instead of 3. I was asked for the consent and I accepted, knowing all the risks.

All this to say that my message wasn't here to argue with anyone, but as you all know, in HIV history, certitudes are never good and what years ago could be right, may have changed and still will, fortunately.

I really believe in this approach, that was my message. And I think it's good for anyone on here to pick up from all our messages "what's going on and what chances do I have?". Knowing is deciding. Not to say in the future "if only I had known".

If I were diagnosed in sero conversion I would start immediately. You can take blood for the genotype test and start the same day on meds. You don't need to wait for the results to come back before starting meds. If the results indicate a meds change so be it, but I would still start immediately.

The research does not indicate any benefit in waiting. Waiting is really an antiquated view of hiv treatment.

I have seen doctors prescribe truvada, Prezista/norvir, and isentress initially during acute infection then drop the prezista/norvir once the genotype comes back.

If I were diagnosed in sero conversion I would start immediately. You can take blood for the genotype test and start the same day on meds. You don't need to wait for the results to come back before starting meds. If the results indicate a meds change so be it, but I would still start immediately.

The research does not indicate any benefit in waiting. Waiting is really an antiquated view of hiv treatment.

I have seen doctors prescribe truvada, Prezista/norvir, and isentress initially during acute infection then drop the prezista/norvir once the genotype comes back.

Hivitalian.....stick with what your doing.

This is if money is no issue, right? If you pay out a hefty co-pay for drugs that won't work, then you're going to have to pay that again--immediately.

On the other hand, there are the studies about starting during seroconversion and "taming" the virus or possibly getting rid of the virus all together. So, I could see why some would want to start as soon as they could get hold of the medication.

Of course. Money, insurance, access, finding the right doctor...there's always something that gets in the way. However, since the hivitalian is from Italy I assume there medical care isn't insurance/cash based like the US. Since his doctor is already on board with treating him ASAP I don't see the need to wait.

Bottom line, if you had the opportunity to treat your HIV really early in your infection wouldn't you do it? I mean, research after research is hinting that early treatment could be key to clearing the virus or the first step in a functional cure. Why not take that advantage?

There may come a time when those who can be cured are people who started treatment early. It's too late for most of us but if you were in those shoes wouldn't you do all you could?

I have seen doctors prescribe truvada, Prezista/norvir, and isentress initially during acute infection then drop the prezista/norvir once the genotype comes back.

Hivitalian.....stick with what your doing.

Yes, I DO agree with that too - that one could start with the Super cocktail, then it makes sense.

Also - HIVItalian and anyone else for that matter - can't "stick" to what he is doing. We only get the opportunity once to treat or not treat in early infection. Its either done, or not. Its nothing to "stick to".

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Normal Life expectancy? Must be a lead in title, because I haven't seen anything normal about living with HIV compared to my friends that are negative.

I've been reading and thinking of a response and this short but quick reply pretty much says what would have taken me several paragraphs to convey.

None of my neg friends my age started having heart attacks in their 30's, severe osteoporosis by the age of 40 and the long host of other ailments. NORMAL? I think not but still better than the alternative.

that was exactly the point. In my country, with all the mess we have concerning politics and disorganisation, at least the health system isn't based on private insurances, and we can have access to any medicine, hiv drugs included, if prescribed by an hiv doctor.

And Mecch, that's exactly what I wanted to say: I think the most important thing is to know what's going on and to have the chance to choose.

Concerning the timing of genotype test, I don't know maybe in USA it's quicker, but here our labs need up to 3 weeks to get the results, and if you are into starting early, 3 weeks can make a change...

Maybe in the future they'll discover that all this was useless and there aren't any advantages, but maybe not.. my numbers are pretty good, after 1 month of haart my VL went from >500000 to 150 and my cd4 from 590 to 880...

This morning I had a blood sample at 2 months...let's cross my fingers:)

Thank you to all guys, this forum is oxigen for me, and any of us I suppose.

Very interesting conversation and I have just one observation to share. When deciding to start treatment, a few weeks or months will not matter in the greater scheme of things. We are talking a life long infection here and for me, to not do a test that will assist me in devising the best possible med regime, is self-defeating.

Leatherman nicely condensed the mutation and resistance changes in HIV, since the beginning and we have the ability to identify which drugs will do no good, and possibly even harm. Why anyone would skip the step of doing a Genotype, if available, is simply beyond my comprehension.

It seems they are skipping it because this "super cocktail" will limit the danger, while there is that guess that treatment right at seroconversion might have some benefit. guess...

As for the semantics of "normal life expectancy" - obviously its great to unpack show the good and bad points of this sort of news announcement.

Anyway, a lot of people explaining that life is not "normal" are making great points. But I think the simple meaning of the phrase is near normal (adjective) life-expectancy (compound noun), and not "normal life". Obviously its a different life than HIV-.

The point of the research is how long someone might life. Nobody is saying their aren't different life courses and different medical issues, different frequencies of age of onset of diseases, etc.....

Its all fucking conjecture because who the fuck knows how long 20 or 30 year olds getting infected today might live... Its actuarial.

Besides, I seem to remember there were English studies a few years back that people in good HIV treatment might actually be healthier than some of their HIV- peers, because the peers are NOT having regular medical check-ups, lots of things can go undetected and/or untreated.....

« Last Edit: March 05, 2014, 02:24:48 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Hi Joe and welcome in this thread,as I said, everything is to be confirmed with the time and studies, but we must know that there are new researches on this stuff, and "for me" and "in my opinion" are terms scientifically not very significant.

English is not my mother language and maybe I've not been able to explain what I wanted to say.

It's just my experience and the idea I had on this acute stuff. As also Buginme said, there are papers on this subject still on trial, as many of you may know. I don't want to give truths that I can't demonstrate myself, I'm a MD even if not an hiv doctor, but I know at least what I'm talking about, and the theories behind this stuff are really interesting, so have a look at this subject on the net and you'll find more than few papers who are discussing this big issue. Some for, some against, as we all are. But in this case it's not about what we "feel", it's about objective scientifical data that so far are maybe not significative, but in the future will be, in one sens or the other.

As i said, maybe in few years this will result in bullshit, but maybe not.

I'm gonna look at some papers I can link on it, and I'll be happy to share ASAP.

Hi Joe and welcome in this thread,as I said, everything is to be confirmed with the time and studies, but we must know that there are new researches on this stuff, and "for me" and "in my opinion" are terms scientifically not very significant.

English is not my mother language and maybe I've not been able to explain what I wanted to say.

It's just my experience and the idea I had on this acute stuff. As also Buginme said, there are papers on this subject still on trial, as many of you may know. I don't want to give truths that I can't demonstrate myself, I'm a MD even if not an hiv doctor, but I know at least what I'm talking about, and the theories behind this stuff are really interesting, so have a look at this subject on the net and you'll find more than few papers who are discussing this big issue. Some for, some against, as we all are. But in this case it's not about what we "feel", it's about objective scientifical data that so far are maybe not significative, but in the future will be, in one sens or the other.

As i said, maybe in few years this will result in bullshit, but maybe not.

I'm gonna look at some papers I can link on it, and I'll be happy to share ASAP.

Talk soon guys!

Nothing you can tell me, will change my opinion on the use of a Genotype before beginning meds. The idea that we have a test that can tell you which drugs to use and ignore it's existence remains self-defeating. HIV needs to be managed and that means using all the latest technology. To suggest that delaying treatment, for a few weeks at most, in order to get a much better predictor of meds, will somehow damage you, is really a stretch.

You have no idea how you might react to the "shotgun" med approach and to not refine that choice, through Genotyping remains beyond my comprehension.

I was diagnosed in the window period; did the genotype which took about 7 days, found I was resistant and that helped me pick my first meds. I really don't see what the fuss is about here. The test works and is reasonably quick.

I have seen doctors prescribe truvada, Prezista/norvir, and isentress initially during acute infection then drop the prezista/norvir once the genotype comes back.

it looks like in here everyone understands what he wants to understand and goes ahead in his own convictions without even reading what other people say.

Concerning me, I'd rather start asap instead of waiting 3 precious weeks in such a short window, before all my gut immune system is fucked up for ever. THEN, if genotype is not the right one, I can change. And as I always said trying to be polite, but maybe people like more talking without reading before , in my country it's 3 weeks, not 1 week for genotype.

Good luck guys. And thank you Buginme for your support. That's what I believe in.

This is what I was told, and I feel pretty confident in my ID Specialist:

I was just diagnosed last week. My partner is poz(UD), but we have also brought someone into the relationship on several occasions. I was informed that if I really felt strongly that I wanted to start meds right here and now, she would. However, she cautioned me: She said my last test 3 months ago was neg, this was poz, so obviously we have gotten to it quickly. I've already had labs drawn for genotype and VL, etc...(18 tues to be exact-bleh) and she's going to compare mine with my partners, and of (I think) other known types. She said if it was my partner that infected me, that I couldn't be on the same meds he was because that strain would have been off meds for a period of time (in me-not him) and become resistant to them. (I guess that makes sense?) I also have more bloodwork in 2 weeks because she wants to see "progression" as well.

So, she basically put it to me this way: She said once she has all the information and bloodwork, it will put her in a position to make a much better decision about which meds she can offer and that getting it right on the first try would make a tremendous difference. (as opposed to starting treatment and then having to stop and restart on another treatment). She also identified herself as a provider who firmly believes in starting meds asap regardless of what my vl or cd4 is.

So, that's what I'm going with. can 4 weeks of waiting really make that much difference?

What I wanted to say in my messages (and maybe someone mislead the sense) is just to suggest some doubts or something to think about for everyone. I'm not sure I'm right because these fields of research are really recent and even among researchers there are different points of view, so who are we to say right or wrong if also hiv doctors are discussing on that.

The subject is: what happens in the first weeks of hiv infection in our bodies, concerning the formation of reservoirs and the damage to our immune system? is it better to stop a high VL ASAP taking the risk of giving the not-so-adequate haart that can then be changed after genotype or waiting few (how precious?) weeks for a more specific therapy?

Honestly, none knows the answer now, last of all me, (and I really envy people who have such certitudes) but I think that at least introducing the problem is constructive for all of us.

These are a couple of links concerning 2 speechs at CROI 2014 in Boston, that I found very interesting.

I suspect, because you are recently infected, your anxiety levels are rather high, so you are looking for justification that you have been especially, brilliantly treated.

Bizkits - your doc seems on the ball. Basically HIVTALIAN is talking about starting immediately with the first doc who identifies a recent HIV infection. So you would need the super cocktail of MORE THAN normally required 3 drugs. So if that is really interesting to you, then you have to ask this ID doctor if she does that sort of thing, too. Because she SPECIFICALLY explained that she does a different thing... Which HIVTALIAN DID NOT DO.....

So in a nutshell, BIZKITS, you would need a doc who is willing, AND you would need access to the drugs and funding to pay them. NOW -- like this week. And then you can worry about HIVTALIANs methods and theories. Otherwise, it's not happening.

Hopefully that puts some clarity on this confusing thread.

Not saying your are out to lunch HIVTALIAN, just saying your treatment is often NOT IN THE CARDS where many are being treated. And plenty of doctors are NOT following this theory.

« Last Edit: March 12, 2014, 05:25:07 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

maybe it's only my impression, but I find you extremely RUDE and not at all helpful in such a thread nor forum.

If you have noticed, i always tried to be polite and friendly, as I am, but if you start arguing like this I must at least say I find you RUDE. I'm a very polite person and I don't want to go down to your level,

That's it.

And maybe my english is not good, I'm sorry I'm not an english-speaking guy, but I think I've been able to explain my point of view with pretty much accuracy.

Thank you for your explanation, it does shed a little light on it. I must admit, I was expecting to go to my ID appointment and be put on meds right away and not waste any time. I really didn't know it got as complex as it did. I mean, I know there's a certain science behind it but just finding out there are things I wouldn't have even thought of to take into consideration. It has all happened so quickly, it's left my head spinning and I'm so thankful to have access to medical care, appropriate funding and support channels (on that note, as crazy as it may sound, I'm kind of glad my partner is poz and has been through all this before. He has somewhat acted as a guide and been comforting) as many others do not. This is not something I want to take any chances with nor make any decisions hastily or without all the information, though I want to be prudent and take appropriate and timely action. It's hard to let go and let someone else take the wheel for me, so to speak-never really been in a position where I've HAD to, so it is quite humbling. Still have a bit of anxiety but every day is a little better.

So, I realize everyone has the right to make their own individual choices and I respect that. I just want to do what is best in my situation and though what my hiv specialist says weighs very heavily, I can't discount the life experience of other "pozzies" (as we seem to be called?). Again, thank you for your clarifying comments.

1) hivitalian is clearly not in the United States. What we take as consensus in the USA will actually vary, country to country. Labs, meds, physicians ... what's accessible and how it's accessible will be different.

2) I do not disagree with genotyping. However, it does not exclude getting started on meds sooner. And if you meet current criteria for treatment (a slowly moving target for some groups like the WHO), you and your doctor shouldn't wait to start. Compliance and side effects seem to be the major concern.

3) I would not be so dismissive about initiating therapy early in the course. The question is actively being studied. So far, we know the following.

The VISCONTI patients (a French cohort, BTW) showed "controller" like status without meds was associated with early initiation by 10 weeks of infection.

The Boston CROI 2014 conference followed up the Mississippi baby and introduced the Long Beach baby. Both were infected at birth and both were aggressively treated after birth. The MS baby is undetectable at 3 years old off meds.

Interesting and telling thread, especially when I started a more "downer" thread with regards to life expectancy. We all love good news, myself included so it's not surprising that "it" got 7x the hits. But I've been a "successfully treated HIV-positive individual and I've been going downhill for the last 18 years. Yeah it's better than my AIDS brushes with death in the 80's, I'll concede that much.

I hope you all understood that I just wanted to share my experience and never meant to give truths to anyone, I think it is clear from reading my old posts. Only research and time will tell us what's better to do in every single situation.

And sorry for having been out for weeks, but I got pretty wounded by some words on here and did'nt want to go on reading. We all are in a delicate situation and unfriendly words can lead to bad mood and depression. This place should be friendly and helpful, not a battlefield. Every single opinion should be given with respect, and I think I did.

For my numbers well...after I wrote last time, my VL went down to 71 and my CD4 UP TO 1034 (39%). This was 2 months after having started.

Waiting for results of last blood sample taken last week (after the 3rd month of therapy) . Let's cross fingers!